The Rough and Tumble of Pre-Christmas

Today I am tearful and I don’t know why then I look at the date and smile. My body knows!  Exactly eleven years ago today I drove to work in Cardiff then home again later. I felt twitchy so I threw on my running gear and closed the back door behind me. I started on my usual route but half way through a little voice said cut this one short. And I did. Later that night my life changed. You all know the story...

Now the run up to Christmas always leaves me with a tumble of strange emotions. Last Christmas was no different. In June last year I said goodbye to a dear friend Jenny because of breast cancer. Then in December I was forced to say a sudden goodbye to another incredibly special friend Carmel. Needless to say, sending Christmas cards didn’t feature on my to do list.

I am telling you this as it reminds me that Christmas is a time of reflection as much as it is about Christmas Trees and gifts…

Lately frustration has planted itself on my shopping list. Frustration that I never have enough energy to tick off even half of the things on my to do list. Frustration that when I plan to do some writing for my Blog and Book my energy decides otherwise, Frustration that when out to shop a seizure stops me taking another step: I stand like a zombie by the disabled spaces outside Tesco. Hand on a parked car.  Mr H is inside ticking off one of our to do’s. I can see the car but my head won’t let me cross the road and get in. I stand there leaning on the stranger’s car.  After ten minutes my scrambled egg head starts to clear and I move forwards. One faltering step at a time, to get in our car and wait for my chauffeur.

But I am lucky as my seizures don’t cause me to fall unconscious. I just feel like I will. My plethora of drugs catch me before I fall. It’s a shame the drugs don’t stop me tripping over my own feet, or a door tread, or a stone, or a slightly uneven pavement slab. My knees at the moment look like those of a child who enjoys rough and tumble in the playground. 

But now I’m complaining and I don’t like to do that. I’ve had another all clear year regarding my brain tumour and breast cancer so I should be celebrating…

So I will bring my thoughts and black and blue knees back to the subject of Christmas… I am not a particularly religious person, more of a humanist I guess. But this year Mr H and I have been supported by some fabulous friends and also a Vicar. He has offered us a guiding hand at a time when we were both in need. 

So as usual I won’t be buying many gifts. I won’t be pounding the shopping Malls because I can’t. I will give family what they need most and my friends my time, support and love. I will donate to our local foodbank, to people who don’t have the basics. I will silently pray in Church on Christmas day. I will be guided by something or someone in the hope that I am doing the right thing with my gift of life…

Let us be grateful to people who make us happy, they are the charming gardeners who make our souls blossom.

Marcel Proust

Three Legs

I am going to wear my leg today I declare with a grin, take two sticks… Good idea Mr H replies

It might help with the rocks, stop my foot from rolling over, stop me dislocating my ankle. It’s worth a try but remember its tricky out there he says with a frown. We pull on our waterproof coats to shield us from the English holiday drizzle, Mr H locks the cottage door.

The walk along the marine parade is easy enough, one foot and stick in front of the other just like my childhood ballet classes, left arm – and stick - right foot, right arm – and stick – left foot…

My paralysed left foot is held aloft by my splint which out of vanity I rarely wear. Once we reach the rock filled beach I pause, hesitate, turn to Mr H with a nervous smile;

Its ridiculous I say, I walked the Grand Canyon, climbed mountain after mountain, jumped out of an aeroplane but now a beach full of rocks makes my legs tremble

Take it step by step Mr H says as I grab his arm to steady myself as I encounter the first wobbly, slippy rock. I’ll tread the path in front of you and you can follow in my footsteps. I follow as my feet sink into the shiny, silvery shingle

This is Ok I say as I pause to regain my balance and watch as the tide slowly retreats into the murky sea exposing flat, safe, brown sand

But as we reach the larger rocks, I stumble, my left foot turns over on every rock despite the third leg. I abandon my second stick and instead cling onto Mr H’s arm as he guides me as safely as possible step by step, rock by rock…

Let’s aim for the sand as the tide retreats, I say reluctantly. Walk diagonally Mr H tells me, it reduces the camber and the slope.

Safely on the sand I look sideways at all the huge wet boulders I want to climb over, I watch enviously as young and old holiday makers spring from rock to rock. Even though Mr H could do the same he never leaves my side

I tread cautiously over seaweed covered flat brown rock now exposed by the retreating sea. I spot sea anemones, crawling crabs and something bobbing up and down out at sea…

It’s a seal I squeal but when Mr H checks with his binoculars he realises the seal is not moving. It’s a stone, a rock he tells me and I walk on, my shoulders hunched in concentration.

I stop after every few steps, pause, look around, breathe deeply. I let the ozone, seaweed smell of the seashore slither into my lungs. My hunched shoulders drop and my breathing becomes deeper and slower. I stay in the moment.

I scan the surrounding rocks, rocks within my reach, for any  signs of prehistoric life. Worn away fossils have left their circular mark but their details have long ago been washed out to sea by the turning tide.

I glance again at the unclimbable rocks, turn to Mr H with a resigned smile, its not going to happen is it. I don’t think so he replies as his mouth curls up with an understanding smile.

I look around once more, then turn to tread the stone filled shingle beach back towards the marine parade …

Tomorrow we will try three legs on more solid terrain Mr H suggests... 

and by doing so we are rewarded, not by a fossil but with a stunning orchid hidden in a wild flower meadow...

   

When defeat comes, accept it as a signal that your plans are not sound, rebuild those plans, and set sail once more toward your coveted goal

Napoleon Hill

Sunshine and Scrambled Eggs

The only sound is a chorus of frantic tweets as baby goldfinches are fed by their parents eager to show them how to find their own food and water. A smile curls on my lips as I sit and listen. I am surrounded by the music of nature. Distant chatter of neighbours enjoying the sunshine is subdued by this joyful sound.

I lift my camera each time a different bird flits onto the water feature to catch some of the cool trickles on this warm summers day. A blue- tit swoops onto the fountain and shakes and splashes its wings. If a bird could smile then this little tit would be gaily grinning as it swishes in the water. I grin too.                         

Another familiar song drifts into the branches of our golden bamboo. I listen. A juvenile robin takes its turn and stands with water dripping off its beak…

A blackbird hops along the lawn looking for dropped sunflower seeds as the inexperienced feeders miss their own beaks. He too then jumps into the water like a child wanting its turn in the paddling pool…

I have no idea of time. No idea how long I sit and listen. And watch mesmerised as these wonders of nature gracefully and musically shower my afternoon with mindful joy.

It has been a tricky week. A week of more seizures and hospital visits. A week of stress and new tablets. I am having to swap one of my epilepsy drugs which I have been on for eleven years. I am scared.

I am swapping because, like the number of birds in our garden, my seizures have dramatically increased. Waves of nausea, a scrambled egg brain and tears roll on and on like waves in the sea. When I rest, my left leg is shaken by electric shock tremors which shoot through my foot. Strange whooshes often disturb my calmness as they pass through my brain like a soundless train; in one ear and out the other…

And my stomach-churning fear of the dreaded tonic clonic seizures deciding to take their turn is as constant as these baby birds hunger.

So how ever much time I have spent sitting, listening and watching the birds. I thank them for the gift of stillness they have given me today.

Together We Matter - Unashamed Pride

You are amazing I tell my friend Julie as I sit by her side at the computer.

This feedback is incredible I grin.

As two bereaved Mums, Julie and Josie are reviewing the comments made by Nurses, Medical Consultants and charity workers who have attended one of their workshops. 

 



They developed their interactive workshops to provide insight into the challenges facing families caring for children born with incurable medical conditions.













It is clear from the feedback that the workshops are beneficial to anyone working with children with life shortening conditions; professional or otherwise: 

Inspirational

Powerful

Humbling

Insightful

My practice will change

These terms jump from the many pages. 

This feedback is profound I tell her. Every lecturer aspires to have such an impact when delivering a workshop. 

I am not surprised as over the last four years of friendship with Julie, I have been inspired by her drive to let her girls lead the way...

Julie and Josie have taken a leap into the unknown, tamed their tigers of fear and nervousness, swept aside their lack of previous healthcare work.

They are experts by experience. They devoted the short time their children were by their sides to their care. They have been on the other side. Been in receipt of devastating news, however it was delivered. Been in the middle of the most challenging caring role anyone of us could ever imagine. Mixed into their deep pools of experience are examples of good and not so good practice. 

But most importantly of all, in their workshops they create a safe space for professionals to ask them, as bereaved parents, questions no one else in their world can answer with such honesty and integrity.

So forgive me if I gush and glow with pride when you ask how my friend Julie is...

You can read more and even purchase a copy of the books they have contributed to on their fabulous website Together We Matter

Furthermore... Julie has recently been nominated as one of the Top 100 Women of the West 2019 (of the UK) so I unashamedly ask you to click here and vote for Julie Kembrey a  lady I am proud to call my friend.

Thank you

A Smiling Face

She calls a name

It's not mine

She grins her familiar grin as another lady stands and walks towards her

Hi I'm Naomi I hear her say

Five years ago I answered her call, stood up, grabbed my stick and wobbled across to meet her, my reading glasses still perched on my head, my knitting hastily stuffed back into my bag.

I followed her into a room...

Five years. It's such a long time, but as it sit here watching it only feels like yesterday.



It's hard to believe that those five years have passed. The whir of diagnosis. Biopsy. Surgery. More results. Chemotherapy. A bald shiny head and never ending nausea. Tattoos for radiotherapy before I popped out at the end of the tunnel with a prescription for Tamoxifen clutched in my pale, shaky hand.

Five years ago. 

But this time my heart doesn't pound, nausea doesn't rise in my stomach, my palms are not sweaty.

I breathe easy. No more bad news today when my name is called.

I want to wave to her and say hello but I know the lady she is seeing needs her uninterrupted attention as she embarks on the journey.

So I just smile to myself in the knowledge that the lady is in good hands.

For me today is just a review. Do I want to keep taking the tablets.

Yes. 

Without a doubt I tell my surgeon when he asks.

He reminds me that there is a chance that some cancer still lurks, clutching to cell walls, waiting for its chance to start multiplying again. But the Tamoxifen should stop it. Block it. Halt its troublesome progress.

So for as long as they'll let me I will continue to swallow the pills.


Meanwhile I will keep making the most of my life full of family and friends. 

I am Rich with kindness and love.